Friday, February 7, 2014

I don't know about you, but I have days...sometimes weeks, when I am so mind boggled that I drive myself insane. I'd like to think it has something to do with hormones or weather. I mean, there has to be a reason, right?! So any way, I wake up yesterday just like every day...with lots to do. I got Carter off on the bus, took a shower and had my husband help get our daughter dressed for the day. For once and in over 6 months, I had an appointment to get my hair done (at 9:00 a.m.), so I was roaring to go. But, of course, we were running behind. This time, because Lily woke up on the wrong side of the bed and she had plans of her own. She screamed, kicked and refused to get dressed. We had to do what all pre-parents say they will never do...we bribed her until she gave in. A hair appointment is rare and exciting for a busy mom, so I was going to get out that door however I had to. I told her, "We will go shopping today, okay?" That worked. And just like any other chaotic morning, I still needed to get gas, a coffee and cash out of the ATM. And because I was still lacking my first cup of coffee, it was difficult to map out the faster route to hit these places so that I wouldn't have to back track and burn more time. But we managed to make each stop with minimal back tracking and get to my appointment. The musts for my day were to get a few necessities at the grocery store and get Carter off the bus by 3:30. Getting my hair highlighted and cut took much longer than I remember it usually taking...but when I don't get it done but twice a year, it's easy to forget. We left my appointment around noon and headed to the store. Once I arrived, I found my 2 year old fast asleep in her car seat. Now, we all know that mommy law is to NEVER wake a sleeping child. Ever. So I headed back home to let her sleep and I could connect to our home wifi for some Facebook time and quiet music in the comfort of my driveway. I could tell right away, that the driveway conditions weren't looking good and just as I started to second guess my choice to gun it any way, my van came to a screeching halt and I mean, screeching halt. I was stuck half way in to my drive way (the back half of my van completely in the street still). For peets and pickles sake. Forward, back, forward, back...nothing. I was STUCK good. My wonderful neighbor quickly came to my rescue with her shovel, kitty litter and phoned a friend with 4 wheel drive to come help. A very nice stranger driving by, even stopped to assist us with shoveling. 45 minutes later, I was unstuck. By then, Lily was awake and remembered my promise to take her "opping mommy" but it was so close to Carter's drop off time, that I couldn't take her shopping. I hopefully promised her that we would go soon. 10 minutes before he was expected home, I noticed a gigantic van stuck at the end of our street (from my couch view out the window) and as the minutes dragged on and it wasn't budging, I decided to call school transportation to tell them I would meet the bus at the McDonalds up the street. On my way to meet the bus, Carter's physical therapist called to say she was 5 minutes away and would brave our mess of a street. Conveniently, my still very whiny 2 year old starts screaming for french fries and "opping momma". I decided against going to that drive thru since I also got stuck there the day before and headed to the next nearest McDonalds, because as most mothers of terrible 2's will do, we will go to desperate measures for the screaming and whining to stop even if for only a few minutes. I chatted with my dad on the phone while I drove and vented about the poor road conditions. About 15 minutes later, the physical therapist called again and asked, "Did Carter's bus run late?" OMG...I forgot the therapist was on her way. I felt like a total jerk making her wait all that time. I hurried home and unloaded my children all the way from my curb parking (because I was too chicken to try pulling in the driveway again). Now, any time anyone is coming over, even the therapists who are here 4 days a week, I tidy and vacuum but that hadn't happened that day. I was mortified and defeated at this point. But what could I do?! I texted my husband that as soon as he got home, I NEEDED to get out the house to recoop from my hellacious day. As soon as he walked in the door, he insisted that he needed to run to the gas station for salt to throw on the drive way. I could have cried...10 more minutes felt like hours. When he returned home, I don't think he even turned his truck off yet and I was running out the door with my coat half on and my hand thrown up in a peace sign as I ran down the drive way to my getaway vehicle! I left for a good hour to get groceries and pace the canned vegetable aisle. Anything for some quiet time, right?! It's amazing what a good, quiet hour can do for your mental stability. I was lucky that Lily forgot how badly she wanted to go "opping momma".

Today went somewhat the same, except my 2 year old was off to daycare first thing in the morning...which also started in a screaming, kicking, "I don't want to" kind of way. But after some coaxing and convincing, she was ready to go. I also got a text from our respite nurse that she was really sick and couldn't come this evening. A kink in my planned out day, but I knew I could pull off my day any way (no other choice, right?!) And on top of an already busy day, I woke with a head cold. Lovely. Once both kids were out the door, I got a shower and started chores around the house. Laundry, tidying, vacuuming, kitchen, calendar, and making beds. 11:00 rolls around and I get a text from a friend, "I'm at Panera, are you here yet?" Oh crap! I almost forgot I was meeting her for lunch. I threw on a clean shirt, my tennis shoes and coat and ran out the door. I managed to get there about 10 minutes later. We chatted and hung out for a couple hours before we both had to go our separate ways. She also has a special needs child so it was great to share our stories and sincerely understand each others struggles...so good for my heart. As soon as I got back home, I did another load of laundry, chatted with my grandpa on the phone for a bit and had to hit the road again. Gas and coffee pit stops on the way. Because our respite nurse wouldn't be coming to get Carter off the bus while I drove to Marshall to get my step-daughter, I had to pick him up from school instead. I got him out to the van and all was going as planned when I realized I hadn't unloaded the play kitchen that I had put in the back of the van the day before. So I mustered all my strength to lift and maneuver the wheelchair into the back on top and beside the kitchenette. This also meant moving Lily's car seat to the back seat with the bench seat half folded so that KayLeigh had a seat in one of the bench seats. I made it to Marshall on time and got KayLeigh. Headed back to Jackson to get Lily from daycare, but first...had to drop off the kitchenette to make room to reinstall her car seat. Then off to the daycare. As soon as I picked her up, she was overly tired and wanting to be held. Luckily, daycare is only a block from home so I didn't have to endure the screaming for very long. Almost as soon as we got home and unloaded, both Carter and Lily fell asleep. Lily across my lap and no way was I waking her up to start dinner. So I waited until she woke up (about 45 minutes later) and luckily, her new kitchenette preoccupied her so I could start our tacos. As soon as we finished eating and I folded one more load of laundry, KayLeigh and I went shoe shopping for her father daughter dance that is tomorrow. That eventually leads me here at my lap top and typing this crazy 2 days out. Somehow this evening, despite giving my voice a break, I lost it because of my cold. No voice at all.

Not all weeks are this insane, but this just happened to be one of them. I am so thankful for my helpful husband, trusty mini van, good neighbors and samaritans, coffee, winter boots and tough nerves. So thankful.

Sunday, February 2, 2014

This last couple of months there have been changes with Carter that are alarming and confusing. In the middle of the night, we will check on him to find he has very high fevers (105), shaking and foam around his mouth. We are able to bring down the fevers with tylenol and motrin (over a 2 hour period). Once the fevers are gone, he has no symptoms of an infection and no more fevers. The foam around his mouth can only be explained as seizures. I talked to his neurologist about this a couple weeks ago and she thinks he has autoimmune issues. We have always noticed that he over heats easily if he's over dressed or outside too long in the summers. And if he gets sick, his fevers sky rocket fast and stubbornly. But never in his life have we experienced spontaneous fevers and seizures. This happened again this morning around 3:30 a.m. I heard him making odd noises, so ran downstairs to check on him. His face was covered in a sticky foam and even his shirt and arm were covered. I cleaned him up, checked his temp (105) and gave him tylenol immediately. I laid beside him for an hour and rechecked his temp (still 104.8) so gave him Motrin. It finally came down. While I was running errands early this afternoon, my husband witnessed another seizure-like episode (eyes rolled back and mild shaking). I called the on-call palliative care doctor to discuss these terrifying spells. The doctor called his neurologist and discussed the issues. The neurologist called me back and said to up his phenobarbital and use Clonopin if we see more episodes. That's it. We are left to fear and wonder what is causing these changes and have been instructed to take him to his primary care doctor this week if fevers or seizures persist.

Last week, I also took him to the eye doctor for an exam. I was very nervous about this appointment because Carter pokes his eyes constantly and I have been so worried about what kind of damage he may be doing to them. The eye doctor noticed right away that Carter's pupils do no respond to light. We have always noticed that and wondered why. We have always said he is our little owl. The doctor said it could either be from his muscle relaxers or issues with his nervous system. She said she sees it in adults and children quite often. The good news was that she didn't see any damage to his eyes from the poking. The bad news was that she worries that the progressive aggression to his eyes could be from a neurological issues that could cause him to be blind. The anatomy of his eye is fine and functional, but it is very common in people who are inflicted with Mitochondrial Disease to lose their hearing or vision due to the brain not processing what it sees or hears. She referred Carter to a specialist who can do more extensive testing to determine how well his brain is processing what he sees. Now we wait. His appointment at the specialist on February 21st. Once we know whether he can see or not, we will order tinted glasses to protect his corneas from the UV light and hope that this will help him explore and look up more (when light isn't so bright to him from the dilation).

Just when his development is at it's best and he seems to be on the upswing after a rough fall with pain and aggression...we face new challenges. We face more unknown and more fears. I am left to re-evaluated and make new plans. This past month, Carter's motivation has waned and he doesn't seem as eager to cruise and play. Seizures are always a huge risk for him and my heart is telling me that this is the issue. My Monday will be spent making more calls to his specialists to ask what we do now. I'm not a wait and see kind of momma...I want testing and answers. I want my son to be safe.

This journey as a mom to a little boy whose life changes from moment to moment, I don't think my mind ever really relaxes. Fortunately, he has stayed out of the hospital since early November and I am hoping we can keep it that way. But if these fevers and seizures don't stop, I worry he will end up in the hospital soon for testing and observation.

On a positive note, I created a team this past week called "Energy for Carter" to raise money that is being donated to Special Olympics of Michigan. Our team has raised 75% of our goal of $400. Yesterday morning, my twin sister and I took the plunge and jumped into a frozen lake in Carter's honor! We dressed up in 80's gear and represented our little warrior! We were even interviewed by channel 6 news before we plunged. A lot of people have asked how it was...my only response is "COLD!" But it was worth it for the amazing cause.

About Me

I am a devoted mother to 3 wonderful children. My son Carter is 4 years old and battling Mitochondrial Disease. He has 2 sisters, KayLeigh and LilyAna who adore their brother. I am fortunate to be a stay at home mom. My life requires the ability to adjust quickly to new changes and circumstances and I'd like to say I have become a professional at learning to duck and dive! I have an amazing husband who works very hard for our family and I am so lucky to have. He is the best dad and husband I could ever ask for.

In my blog, I will share my journey as a mom to a medically complex child along with raising a rambunctious 1 year old and smart, creative 8 year old. I hope to raise awareness about Mitochondrial disease, cerebral palsy, epilepsy, and eosinophilic esophagitis. Join me on our journey!